Download What gets in the way of Faster Cancer Treatment? A review

What gets in the way of
Faster Cancer Treatment?
A review of factors that cause patients
to delay or decline treatment
Marie Young and Lisa Reynolds
Cancer Support: Psychology and Social Work
Counties Manukau Health
Auckland, New Zealand
Acknowledgements
• Co-investigators: Frances James, Vanessa Garcia-Hoyos, Karin Jansen,
Jackie Chadwick, Allan Edmondson, PWCC Consumer Council
• Patients who have generously given their time and shared their
experiences
• Richard Small, Carl Eagleton, Brad Healey
• Anne-Marie Wilkins, Lead Cancer Nurse Coordinator
• Leilani Jackson, Pacific Cancer Nurse Coordinator
• Tanya Weeks, Maaori Cancer Nurse Coordinator
• CM Research Office and Health Intelligence Team
Getting cancer treatment quickly
• Timely treatment helps to ensure better outcomes and
can reduce the stress on patients
• However, there are major disparities in accessing
treatment for Maaori and Pacific populations
• Based on overseas experience, Ministry of Health in NZ
introduced the Faster Cancer Treatment (FCT)
programme (2014) to reduce waiting times for
appointments, tests, and treatment
Faster Cancer Treatment (FCT)
62
days
Initial
symptoms
GP visit
Referral
received
FSA
14
days
Decision to
treat
31
days
First
treatment
Treatment
finishes
Faster Cancer Treatment (FCT)
62
days
Initial
symptoms
GP visit
Referral
received
Referral received for a
patient with a high
suspicion of a new
cancer (i.e., not
recurrence or
metastases)
FSA
Decision to
treat
First
treatment
Treatment
finishes
MOH target – from July
2016, 85% of patients
should receive their first
cancer treatment within
62 days of referral (90%
by June 2017)
Research agenda
Review the factors that cause patients to delay or
decline treatment on the 62 day pathway
How many?
Who?
How come?
Stage 1. Analysis of clinical records:
• Period Feb 2015 – Jan 2016
• Quantitative analyses – compare patients
who met 62 days to those who did not
• Identify those who did not meet 62 day
target due to patient factors
Stage 2. Qualitative analyses:
• Understand reasons why patients
delay/decline treatment
• Clinical notes audit + interviews
(approx. n = 20)
Feb 2015 – Jan 2016
470 people started
treatment after referral
with high suspicion of
cancer
332 people met the 62 day
target (70.6%)
138 people (29.6%) did not
9 people
(1.9%)
declined
Ethnically
diverse
– 16%
Maaori, 21% Pacific, 24%
treatment
completely
Asian, 38%
NZ European /other
36% live in significant socioeconomic deprivation
How do people who met the 62 day
timeline compare to those who did not?
No difference in age or
gender
But, people who did not
meet timeline live in
greater deprivation
(p=.000)
Significant difference in
ethnicity (p=.001)
Significant difference in
tumour stream (p=.000)
15%
n=17
27.7%
n=64
Breast
NZ
European
N=111
N=231
26%
28%
n=12
n=12
Asian
Lower GI
N=47
N=43
44%
n=31
45%
n=19
NZ
Maaori
Urological
N=71
N=42
Gynae
N=38
Pacific
N=63
43%
n=27
66%
n=25
Why?
Reasons
for delay
clinical
complications
in diagnosis
identified in
clinical notes
distress
family
prioritisation
treatment for
another condition
treatment barriers due
concerns / comorbidities
anxiety
impact on
multiQoL
?
factor
patient
other
priorities
conflict with
beliefs
delays to
other
investigations
engagement
capacity
constraints
system
understanding
emotional time needed
avoidance to consider
options
practical
problems
faults /
mistakes
Reasons
for delay
People who experienced treatment delays
clinical due to ‘patient factors’ &/or declined
treatment (n=43)
How are these people different to
everybody else?
identified in
clinical notes
distress
family
treatment barriers due
concerns / comorbidities
anxiety
impact on
multiQoL
?
factor
patient
other
priorities
conflict with
beliefs
• No difference in age
delays to
otherlikely to be
• More
investigations
p=.022)
women (χ=5.27,
• Difference in ethnicity (χ=18.79,
p=.001). Compared to NZ European –
Maaorisystem
2.84x, Pacific 4.03x
engagement
• Difference in cancer type (χ=21.10,
p=.004). Women with gynae ca 3.25x
practical more likely than with breast cancer
understanding
emotional time needed problems
avoidance to consider
Qualitative interviews to gain richer
options
understanding of patient factors leading
delays
to
Kevin
•
•
•
•
76 years, NZ European
Urological cancer
No idea about timelines or faster cancer
treatment
Transport issues identified on clinical notes
“It’s a volunteer bus that comes and gets
you… The appointment was at so and so
time, I was there at 9 o’clock, … waiting
outside, and they never came.”
•
No sense that there might have been delays
Hepi
•
•
•
Tongan, 55 years,
Gynaecological cancer
Delay reason: ‘patient choice’
– cancelled her specialist appointment to look after
her sister going through stem cell transplant
•
•
•
Talking to Hepi – other issues evident
Gynae bleeding for at least 2 years that she
had not consulted a doctor about
Routine smear test from family doctor showed
clear results
– “and I didn’t say anything about my bleeding
because I know for sure that she will get it …
when doing my smear, my swab”
•
Hepi spoke up
Doris*
•
•
•
NZ Maaori, 68 years
Gynaecological cancer
Delay reason: ‘transport issues’
• want
Did not
any
realhospital]…
problems with
“I did
to perceive
come here
[local
because it
timeline
was closer
to my family to visit me. But she sent me
“I always
felt I was
making
decision
to Auckland
… that’s
where
the the
bestright
place
is for all
you…
through
journey.”
and that
all themy
doctors
are there, the specialists’ and
all that’s there… and they said think about yourself,
“I actually thought that two months [to have] the
worry about yourself, don’t worry about your family,
operation was a good time… but in saying that I wish
and that gave me the trust in them by pushing me to
that it was quicker because obviously I was in a lot of
be there... and that’s why I went there. I took that
pain, and I was sick of taking Paracetamol every day
option, and too bad for my family, they just have to
and night. If I wasn’t in the pain I was in I wouldn’t
travel.”
have minded waiting a bit longer.”
Emerging themes
• Practical barriers e.g., transport didn’t turn up, couldn’t
afford time off work to attend appointment
• Family priorities e.g., attend a wedding, babysit
grandchildren, look after unwell relatives
• Treatment concerns e.g., conflict with traditional medicine,
fears about side effects
• Distress associated with diagnosis and/or treatment
• Prioritising life experiences e.g., go on a holiday (and the
doctor said it would be fine)
• ….
process errors
Subtle disadvantage adds up
“Subtle but accumulating
disadvantage, ultimately
producing a substantial
treatment disparity…”
(Hill et. al, 2013)
clinical
complications
in diagnosis
distress
family
prioritisation
treatment for
another condition
treatment barriers due
concerns / comorbidities
anxiety
impact on
multiQoL
?
factor
patient
other
priorities
conflict with
beliefs
delays to
other
investigations
engagement
capacity
constraints
system
understanding
emotional time needed
avoidance to consider
options
practical
problems
faults /
mistakes
Inequities in delay
• Maaori and Pacific, and people living in greater deprivation
much more likely to experience delays to cancer treatment
• ‘Patient choice’ is a poor descriptor
• ’Small’ issues add up
• Pushing people along the pathway isn’t always best for the
patient
• Next steps:
•
•
•
Complete qualitative interviews
Simplify the complexity without losing richness of personal stories
Change the way we meet our patient’s needs to reduce delays where
appropriate (and allow time where appropriate)
process errors
Questions?
“Never worry about numbers.
Help one person at a time,
and always start with the
person nearest you”
Mother Teresa